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Case 5 The patient as partner
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Case 5: The patient as a partnerLearning goals:
1. What is personalised care?
2. What is shared decision making and why is it important?
3. How can patients be involved in quality improvements?
4. What are the benefits and difficulties in involving patients?
5. How can we measure patient satisfaction and why is it important?
6. Practical application task
Literature suggestions:
Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, Cording E,
Tomson D, Dodd C, Rollnick S, Edwards A, Barry M. Shared decision making: a model for
clinical practice. J Gen Intern Med, 2012;27:1361-67
INTRODUCTION
Shared decision making (SDM) has been defined as: ‘an approach where clinicians and
patients share the best available evidence when faced with the task of making decisions,
and where patients are supported to consider options, to achieve informed preferences”.
GUIDING ETHICAL PRINCIPLES
At its core, SDM rests on accepting that individual self-determination is a desirable goal and
that clinicians need to support patients to achieve this goal, wherever feasible. Self-
determination in the context of SDM does not mean that individuals are abandoned. SDM
recognizes the need to support autonomy by building good relationships, respecting both
individual competence and interdependence on others. These are the key tenets of both
self-determination13 and relational autonomy.
- Self-determination theory is concerned with our intrinsic tendencies to protect and
preserve our well-being.
- Relational autonomy is the term used to describe the view that we are not entirely
free, self-governing agents but that our decisions will always relate to interpersonal
relationships and mutual dependencies.
However, some healthcare professionals express doubts, saying that patients don’t want to
be involved in decisions, lack the capacity or ability, might make ‘bad’ decisions, or worry
that SDM is just not practical, given constraints such as time pressure. Others claim they are
‘already doing it’, though data from patient experience surveys indicates that this is not
generally the case.
WHY SHARE DECISIONS: BEYOND THE ETHICAL IMPERATIVE
SDM is showing knowledge gain by patients, more confidence in decisions, more active
patient involvement, and, in many situations, informed patients elect for more conservative
treatment options.
DOING SHARED DECISION MAKING
,We propose that achieving SDM depends on tasks that help confer agency, where agency
refers to the capacity of individuals to act independently and to make their own free
choices. SDM aims to confer agency by
1) Providing information: We help patients participate by providing high quality
information. We also need to elicit what patients already know, and whether it is
correct.
2) Supporting the decision making process/ Supporting Deliberation: The second task is
to support patients to deliberate about their options (see Fig. 1), by exploring their
reactions to information
A MODEL FOR CLINICAL PRACTICE
We describe three key steps of SDM for clinical practice, namely: choice talk, option talk and
decision talk, where the clinician supports deliberation throughout the process (Fig. 1 and
Boxes 1, 2 and 3).
- Choice talk (is changed to team talk because it is about working together) refers to
the step of making sure that patients know that reasonable options are available.
Choice talk is about making patients that reasonable options exist. This step does not
necessarily have to be done face-to-face. ‘Choice talk’ is a planning step.
Components of the choice talk include:
o a) Step back. Summarise
o b) Offer choice. Beware that patients often misconstrue the presentation of
choice and think that the clinician is either incompetent or uninformed, or
both.
o c) Justify choice. Emphasise: 1) the importance of respecting individual
preferences and, 2) the role of uncertainty.
Personalizing preferences: Explaining that different issues matter
more to some people than to others should be easily grasped.
Uncertainty: Patients are often unaware about the extent of
uncertainty in medicine: that evidence may be lacking and that,
individual outcomes are unpredictable at the individual level.
o d) Check reaction. Choice of options may be disconcerting: some patients
may express concern.
o e) Defer closure. Reassuring that you are willing to support the process.
- Option talk refers to providing more detailed information about options
o a) Check knowledge. Even well-informed patients may only be partially aware
of options and the associated harms and benefits or misinformed.
o b) List options. Make a clear list of the options as it provides good structure.
o c) Describe options. Generate dialog and explore preferences. Describe the
options in practical terms. Point out when there are clear differences (surgery
or medication), where postponement is possible or where decisions are
reversible. Being clear about the pros and cons of different options is at the
heart of shared decision making. Learn the about effective risk
communication, about framing effects and the importance of providing risk
data in absolute as well as relative terms. Try giving information in ‘chunks’
(chunking and checking).
, o d) Provide patient decision support. These tools make options visible and may
save time.
o e) Summarize. List the options again and assess understanding by asking for
reformulations. This is called a ‘teach-back’ method and is a good check for
misconceptions.
- decision talk refers to supporting the work of considering preferences and deciding
what is best.
o a) Focus on preferences. Guide the patient to form preferences.
o b) Elicit a preference. Be ready with a back-up plan by offering more time or
being willing to guide the patient, if they indicate that this is their wish.
o c) Moving to a decision. Try checking for the need to either defer a decision
or make a decision.
o d) Offer review. Reminding the patient, where feasible, that decisions may be
reviewed is a good way to arrive at closure.
DELIBERATION
We use the term "deliberation" (see Fig. 1) to describe a process of considering information
about the pros and cons of their options, to assess their implications, and to consider a
range of possible futures, practical as well as emotional. This ‘deliberation’ space, colored
grey in the figure, encompasses the need to work collaboratively with professionals as well
as with the wider networks that patients will use. Deliberation begins as soon as awareness
about options develops. The process is iterative and recursive, and the intensity increases
after options have been described and understood.
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